Friday, January 02, 2015

Deeper into hell

Not even a week into my recovery home from the hospital, to be exact it was 2 days... 2 days... and I find out that my incision is soaking through the bandages with discharge like crazy. The real issue was when I took the bandage off and it was just bright red blood. I immediately call the office and get an appointment to come in.
This is when the fun just begins... a small area of my incision right beside my belly button was trying to open and was pouring out discharge and pus. So in office my Dr had to reopen this small area. The nurse showed us how to pack this small hole with guaze twice a day.
I was also started on an antibiotic as well since the incision had become infected. We thought that was all the problem and it was solved now and the rest would be easy sailing.
Two days later as I'm taking a shower and using every last ounce of energy I had, I broke down. Looking down seeing my body in the state that it is in. Feeling how horrible I felt. Knowing this was not how it was supposed to be. I cried. And I cried. I hurt, every spot hurt. My incision was draining massively, the antibiotic made me sick. It was horrible.
So after some crying I texted my Dr. I told him what was going on and he agreed to see me the next day in office and would change my antibiotic.  All I had to do was make it through one more day.
I honestly had no idea what to expect. I knew he would have to open up my incision more but the way I felt I figured I would be in the hospital to do so. But no, let's just say I am glad that my Dr has good taste in picking out his residents cause anyone else couldn't have convinced me it was ok.
But here is this resident re opening my incision as I lay on the office bed. It was horrible.  It was painful, I about passed out twice. They had to lay the bed back and take my vitals and give me a break cause it was just horrible. Really there is no other way to describe it but horrible. I laid there while feeling him pull apart my skin, then pack it with guaze and cover it up. I left with a 12 inch long open incision on my belly. It felt like my insides were going to fall out.
I saw my Dr again a couple days later and he was definitely happy with his residents work on my belly. Although he was ultimately unhappy it happened to begin with. He said only 25% of the time do people get infections. I was just lucky I guess. He wanted my incision to be pretty and heal nicely so he had closed it with internal sutures and then glue on the outside. He said he could have used staples, and this wouldn't have happened but the incision wouldn't have been as pretty. I guess now it doesn't matter because it is definitely not pretty at this point. But he reassured me once it is healed he will fix it.
He also ordered home nursing to come out and evaluate my wound for a wound vac which would aide and speed up the healing process. So I spent the next week waiting on the home health nurse company to come see me. They finally showed up, went through all my intake questions, talked to me about a wound vac and supposedly placed an order for one. I say "supposedly" because after several calls and finally a letter in hand given to the nurse, I never saw the wound vac.
Luckily my mom came over twice a day to repack my incision, help me shower and take care of my kids and all the other daily activities. I still felt like my insides were falling out. It hurt to move, it hurt to walk, I slept on the couch cause I couldn't lay down. I had my drain tube still in which drained my kidneys and new bladder. I honestly felt like I had made the worst decision of my life and I knew it wasn't supposed to be like this. I broke down and cried too many times to count. It wasn't supposed to be this way.
That's all I could fatham. It wasn't supposed to be like this. I was supposed to be halfway through recovery. Feeling good, using my new bladder. Enjoying Christmas with my family. But I wasnt. I was confined to the couch in my living room. Only getting up to empty my drain bag. I had no energy, no will, no want to do anything else.
I was very depressed although I tried not to show it to my kids. But I missed them. I missed everything.
To be continued...


  1. Oh my gosh. I am sooooooo sorry!!! I cannot believe that did that right in the office. I would have passed out too. Ouch ouch ouch ouch ouch

  2. Im so sorry you got a full blow infection....I was opened about 3-4 days out - she said oh only 3-4 staples, it was like 7....I had wound care for 2 months but it healed. After my revision, he fixed it and you'd have no idea I had an open wound.

  3. Crystal....I am sorry your road is so bumpy, it is a very very hard surgery to get over. I was told to expect at least one additional hospitalization, I had so many I forget. I also had a revision surgery and lost a kidney......but Im doing pilates, in another post masters program, chasing after 2 little people. I love my IP. I won't say some days haven't been hard.....but honestly plan on a good 6-12 mo to feel like your New self again. I had a blog on my situation but I had a domain issue and so I haven't had time to repost b/c Ive been so busy living life! Feel free to write.....I had mine 2/12 with revision 8/12 and nephrectomy 1/14. Losing the kidney was bad luck of scar tissue. I see the same MD. I tried everything since age 5 on....I did not have a tiny ulcerated bladder but I had no quality of life......I love the one I do now! Hang in there and write if you need some support. There are also many people on the Bladder Cancer Network who have IP's for Cancer but are still supportive to use IC folks.